When My Unborn Son Was Diagnosed with Down Syndrome, I Thought God Was Punishing Me

But I was so wrong.

I have one major regret in my life, and it's the amount of time I spent — wasted — agonizing over my unborn son's Down syndrome diagnosis.

Now, of course, I understand. Now, I realize his extra chromosome has gifted me with the life I was meant to lead.

But on the day I received the diagnosis, only darkness, worry and guilt flooded my mind. I was sitting in my cubicle at work when I saw the missed call from our genetic counselor. I wasn't sure why she was calling, because our amniocentesis results weren't due for another 24 hours, at least.

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It was just days before my husband and I were to be married. We were too old and too in love for our wedding to be considered "shotgun," at 39 and 36, respectively. Discovering we were having Charlie was the most unexpected and wonderful experience of our lives.

Our perinatologist had done an excellent job preparing us for a positive test result. He was calm, comforting and matter-of-fact. By the time we had our third child, just three and a half years later, we considered him and his nurse family. I mean, the man had stuck a huge needle into my belly and extracted fluid from Charlie's lung cavity. In utero. Hello, new family member.

But getting the diagnosis… well, the truth is that I remember that and I don't remember finding out we were having a boy. That makes me sad. So many wonderful moments, overshadowed by a lack of education and an overabundance of crippling guilt.

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I listened to the genetic counselor's message and, even though we had already agreed we knew the outcome, her voice was the ultimate confirmation. She was young, and her voice sounded simply morose and drawn out and miserable. She could have stood in for the adult voices in any Peanuts cartoon. Wah-wah-wah.

Thankfully, a colleague with a real office with a real door was traveling. I slipped in and shut the door quietly, firmly. I called her back.

I don't really remember how she put it anymore. I remember almost making it through the whole conversation without breaking. I remember looking around the office for tissues and cursing my male colleague for apparently never needing them.

My cube neighbor and friend came into the room with a box of tissues. I told her, but I don't remember what I said. All I remember is crying, hugging her and practically whispering my biggest fear: "But I don't have any patience."

All I remember is crying, hugging her and practically whispering my biggest fear: "But I don't have any patience.

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My husband took the news in stride that night. He had already attended a support group the night before, hours after we'd had the amnio, and was in a different place emotionally.

I was devastated. I was sure God was punishing me for so many of my life's transgressions. I had been engaged once to a Navy officer and insensitively (although, really, what choice did I have) called off the wedding while he stood on the other side of the world, at a pay phone with a line of service men and women behind him deployed to protect our freedom as I decided I wanted mine.

In my murky grief, I felt God was punishing my child for my mistakes. I regretted the years I spent telling boyfriends I didn't think I even ever wanted to have children. I was certain it was all my fault.

Naturally, that's complete nonsense. Down syndrome simply happens. Nothing is known to cause it, least of all life-changing decisions in my own best interest.

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But it took me months — the whole pregnancy, in fact — to realize how wrong I was. At night, as my new husband slept soundly, I crept into the adjacent bathroom, huddled on the cold tile floor, held my belly and sobbed. I pleaded with God to make the doctors wrong. I pleaded with God to protect my baby. "Why my baby? Why MY baby?" I whispered as tears fell on this perfect little basketball growing in my belly.

Then Charlie was born. He came seven weeks early, with a shock of bleached-blonde hair that came from his own genetic recipe and neither of our family trees. He had a chest tube for a week, so it was several days before we were able to hold him.

Once I was able to hold him, I never wanted to let him go. During week three of his NICU stay, I missed a morning of bradycardia events because I met a friend for pedicures. I was certain God was punishing me again. (Apparently, pregnancy obliterates all rational thought capabilities with me.) I stood beside his bassinet, stooped and caressing his downy soft head into the night.

Down syndrome doesn't happen to good people. It doesn't happen to bad people. It happens. There's no "little bit" of Down syndrome; someone either has it or he doesn't. Down syndrome doesn't occur because the mother is old, or flaky or indecisive or impetuous.

Charlie is 5 years old now, in a general education kindergarten class where about 10 little girls work to mother him every day, which kind of explains why he poked one in the eye recently. We're learning how to meet his educational needs and trying to help our school district understand the benefits of inclusion, because, truly, if he doesn't learn how to behave among his peers now, when will he?

We actually skipped the Buddy Walk this year, not because we've stopped celebrating Charlie but more because we've stopped needing to hear everyone else celebrate him. Now, we focus on Down syndrome cognition research, which is what organizations like LuMind Down Syndrome Research Foundation spotlights. We want Charlie to have the chance to live as independently as he chooses, and cognitive therapies to increase his IQ even 15 points can make that possible.

I quit my corporate job to be home for him, as well as our daughter and, born nine months after I stopped having access to maternity leave, our second son. I've found my place in the world, writing about Charlie and our children. Helping people understand how he is capable of so very much, helping rally for more advocacy, tangible benefits, more inclusion.

I was terrified when I first heard the words "Down syndrome" because I thought our lives would be changed for the worse. I was wrong. Completely, utterly wrong. Life is completely, utterly amazing, and I have three beautiful children who are destined to change the world, regardless of their chromosome counts.

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